Learning of a recurrence

When symptoms recurred, or when new symptoms appeared, people went back to their GP or reported the symptoms to a hospital doctor or nurse. The doctor then usually ordered tests, e.g. blood tests and CT scans. Some people had a PET scan (see ‘Signs and symptoms of a recurrence’). Some people discovered they had a recurrence after routine tests as part of follow-up before they had symptoms.

Lesley is a housewife. She is married and has 3 children. Ethnic background/Nationality' White British.

I got my letter to go to the specialist hospital. So I went. My brother in law went with me as normal. Because he went to all my appointments because like I said we couldn’t afford to have my partner off at the time. So we, we really needed the money because I wasn’t, I was only on sick pay.

It was a really bad time last year. So my brother in law went with me as normal. You know, laughing and joking as usual. He’s more like a brother.

And we went into the doctor’s office, and he [the doctor] is sat on the floor, which was quite strange and he, two chairs there so we sat down on the chairs. And he sat on the floor next to me. And whether it’s a comfort thing for him I don’t know, but, and he was, he started saying how the scan came out fine and, but they’d found some shadows on my liver, what are called metastases or something like that. So I said, “Yes, so it’s gone to my liver?” Because I’m not stupid you know. He said, “Well yes”, he said, “It’s gone onto your liver” sort of thing, “And these shadows are like little lesions on your liver and I’m afraid its, there’s nothing else we can do”. So, okay. And it didn’t, didn’t get me then it just sort of went over my head. I didn’t dare look at my brother in law for some reason, I thought I can’t look at him.

He [the doctor] said, “Right,” he said, “Right we’ll go and take you down to go and see the research nurse.” I said, “Okay, we’ll do that.”

And I just went with him. And I’m thinking, “Now, he’s taking me down to see her. Maybe she, maybe she’s going to tell me something else, you know, something else they can do. But he’s the doctor.” And all of this is going over in my head.

Yes.

And it wasn’t until we got downstairs we were in like this big waiting area that they had, which, on the chemo unit, and we sat there and I sat on a chair and my brother in law sat next to me. And that’s when it hit me. I just sort of went and crumpled up onto him. I think he had a weep. I know I did.

You were with the nurse then were you?

No it was just me and my brother in law because, my doctor had just said you know, “Just wait here and I’ll go and get her for you.”

I said, “Okay.” But I crumpled up on my brother in law, I think he had a bit of a go himself.

People usually learnt that their cancer had returned from a doctor in a hospital clinic once the test results were back. Steve had realised the news was bad because a nurse was also there - but of course the presence of a nurse does not necessarily mean bad news. Specialist nurses may be present at any consultation: a multi-disciplinary team usually includes specialist nurses. After many consultations patients spend time with the nurse, discussing treatment and care in further detail.

Helen is married and has 2 children. She is a clerical officer. Ethnic background/Nationality' White British.

So I went for my CT scan again. And a couple of weeks later, oh, I hadn’t, well, I hadn’t, I didn’t hear anything for about three weeks actually, and I was starting to relax then because I thought, “Oh, well, it can’t have been anything. Not heard anything. It must be fine. They would have let me know by now.”

And I’d been out for the day with my sister and she’d said the same to me, you know, “Have you heard anything?” And I said, “No.” I said, “So I assume everything’s okay.” I’d had an appointment made to see the consultant, but it was cancelled for some reason and another one was made for the following week. But then when I got home that day there was a, a message on my answer phone from the Macmillan nurse, asking me to ring him, which I did. I was, I was a little bit, you know, I thought, “Oh, that’s a bit strange.” So I rang him up and, you know, I said, “It’s Helen, is everything okay?” And he said, he said, he asked me how I was at the time, you know, and just general conversation. And I knew, deep down I knew there was a reason why he was ringing and I was thinking, “Just get to the point, get to the point. Please, just get to the point.” And he finally said, “Look Helen.” He said, “I wouldn’t normally do this.” He said, “But I feel that we’re friends and we know each other well now.” Because I’d, I’d had a lot to do with the hospital. I’d been involved in a press launch and things. He said, “And I wouldn’t normally do this over the phone but I know that you can take it. You, you know, you’re, you’re quite sensible”, he said, “But something’s shown up on your scan.” And I said, “Oh.” I said, “And I thought there was a reason you were ringing.” I said, “Go on. What?” So he just said, “There’s a shadow.” He said, “We don’t know at this stage what it is.” He said, “But it’s quite possibly a secondary.” I said, “Right, okay.” I said, “So what now then?” He said, “Well, we’ve made you an appointment. Come in and see the consultant, and they’ll discuss it more with you.” So I said, “Okay.” So anyway we went off the phone and I thought, “Oh.” So I had a bit of a cry.

Whereabouts was the shadow?

On my, on my liver. I rang my sister straight away and told her. So she was upset obviously. And my husband, I didn’t tell straight away, because he was in work and I didn’t want him getting upset in work and then driving home, because it was quite a long drive. So I waited till he got home before I told him. So he was a little bit taken aback. But he was kind of philosophical about it and, “Well, we’ve done it once. We’ll beat it again” you know, kind of thing. So he was like, “We, we, we’ll deal with it. Don’t worry about it.” And I kind of, I kind of agreed with him, but at the same time I felt that that was it. It was back and this time it was going to try and get me. So that was, I, I did find it, that was more shocking to me than the first time. It, it, it was more frightening, far more frightening than the first time. So it was very difficult.

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Profile Info

Age at interview:

62

Sex:

Female

Age at diagnosis:

62

Background:

Ann is married with 3 children. She was a GP for over 35 years til her retirement when she developed pancreatic cancer, co-founder of the charity that runs healthtalk.org inspired by her own experience of breast cancer, and Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality' White British.

And I remember lying there thinking, that was five days ago, thinking, “Well, I’ll be very surprised if there’s not something going on.” And he, the scanner, the radiotherapist, radiologist came back and said could he then do a scan of my lungs? And so I knew then there was something wrong going on. And it was strange, because I think he was more upset than I was at that point. Because I, in a way I’d prepared myself. He had done a scan when I thought I had symptoms about a year ago and it had been nothing. So I think, I don’t think he thought I was making it up, but I think he felt partially reassured, although he’d always taken everything very seriously. And I think one of the great things was that when I rang my GP telling him the symptoms, he got the scan immediately. So I didn’t have to wait. And I think that’s one of the things which is so difficult. And moreover I didn’t have to wait for the results. I didn’t have to wait for the next appointment, because I knew the radiologist. He gave me the results straight away. And if he hadn’t, it would have been nice if, for other people, that someone could tell you almost immediately. I think it’s rather like when you have a baby and there’s that hush in the room when something’s gone wrong. And you know something’s wrong, and nobody’s saying anything. And s-, I think when people are doing the scanning there is a sort of hush afterwards. Because they say, “Well, your doctor will let you know” in a way, said in a way that somehow makes you alert there might be something wrong.

Anyway he showed me the scan. And it was very obvious that if you compared my old scan with my new scan that the cancer had come back, not only in my, round the pancreas area, where the pancreas had been, but also there were some secondaries in my lung. I’m still trying to take that on board in a way.

People reacted to the news of a recurrence in various ways. Shock and disbelief were common. However, Hamish had not been surprised because he had lost so much weight, and John (Interview 40) said that the news that he now had cancer in his lung was shocking but this had not been as traumatic as hearing the initial diagnosis of cancer of his pancreas.

Michael is a retired wine merchant. He is married with one adult child. Ethnic background' White, half Polish half British.

It must have been very difficult for you when you discovered it had come back.

Yes, I think you’re right. I haven’t really sort of touched on that. That was quite a shock in a way, both for me and for my wife, and one mustn’t forget the you know traumatic experiences for one’s near family, and how they cope with it as well because it’s I think, in this, that sort of diagnosis is as traumatic for them as it is, as it is for you.

Yes it’s a difficult time I think, and certainly it knocks one’s, one’s sort of confidence because one I, I’d hoped after 21 months that one had got through it, and that was, one was going for the sort of 5 year mark, or certainly for the 3 year mark. And then to find that it had come back was a bit upsetting and de-stabilising I think mainly. But I have great hope that this Cyberknife treatment will work and I think the key thing here is one, one mustn’t think of the future, you just have to enjoy the moment. And as I think this is the same thing with all cancers that you’re, you’re in remission. You’re never necessarily actually cured. You can be in remission for fifteen, twenty years and it’s effectively cured, but I think you’ve always got this sword of Damocles hanging over you and you just have to try and put it to the back of your mind and enjoy life.

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Profile Info

Age at interview:

76

Sex:

Male

Age at diagnosis:

72

Background:

Hamish had a lighting consultancy until he retired. He is married with three children. Ethnic background/Nationality' White British.

So what was your reaction when you heard that the tumour had grown again?

I was fairly certain it was because of the way I’d lost all the weight.

And from my previous experience I thought, “Yes, you know, there’s no other reason that it should be doing this.” So…

It wasn’t a huge surprise to you then?

No, it wasn’t a surprise. It was a disappointment. Very much of a disappointment.

Of course.

But I thought, “Well, it’s there. You know, I’ve had three or four years, for heaven’s sake, and that’s a lot more than most people get.” [laughs].

Others also said they weren’t really surprised that their cancer had recurred, because they were aware of the statistics, but at the same time felt disbelief. Ann feared that she would die quickly and it was difficult to plan her life. Although she stressed that she didn’t feel depressed, she said that she felt very sad that she would not be able to see her grandchildren grow up. She also felt a sense of “Jewish guilt” and a sense of failure because she was giving her children so much to deal with and because she was making them unhappy. Telling them what had happened was very difficult (see ‘Telling others about the illness’).

David (Interview 09) had felt relief that his doctors had found the cause of his symptoms. He had lost weight, with nausea and diarrhoea for about a year and had been very upset when his GP suggested his symptoms might be all in his mind.

David is a Detective Sergeant in the Metropolitan Police. He is married and has three children. Nationality/ethnic background' White European

We were talking about the fact that, we were talking about the fact that you were told there had been a recurrence.

Yes.

What was your reaction to getting that news?

Relief really because for a year I’d been sort of saying,” Look, there’s something not right. I’m losing weight, I’ve got nausea, I’ve got diarrhoea.” And again at one point I even went to my local GP, because I didn’t know where to turn to, no-one was sort of, seemed to be listening to me. And my local doctor basically sort of more politely offered me psychiatric care. Is that the right word? Counselling? Holistic, an holistic approach, “Maybe it’s in your mind, and it’s mind over matter”. And that just, ah, I was, didn’t openly say it but I was absolutely fuming.

Because in my mind, in my mind I knew it was there and I thought, “Oh well this is my seventh year, I’m a seven year survivor” and I think one of the reasons why I, I’ve been here so long is I seem to present symptoms very, very quickly, like when the original tumour came, it was a very small tumour, which blocked the bile duct, which caused the jaundice which then flagged up the tumour.

When Audrey heard about her recurrence she was very disappointed and upset. She had thought that surgery had cured her. After getting the bad news she spent the first night lying awake composing what she planned to write to members of her family.

Others were more optimistic. Vicky said that nothing could be worse than the surgery she had had already. She felt she had been lucky because she had been diagnosed early and survived surgery and she thought that other treatment would be minor in comparison. Peter (Interview 43) was also optimistic and was confident that he would survive.

Peter is a retired bank manager. He is married and has two adult children. Ethnic background/nationality' White British.

I came home; I was supposed to be at the golf club helping to officiate in a big competition, in which my wife was playing. “How did you get on?” she said. I said, “Oh usual rubbish, waste of time.” Till we got home. And I had to tell her, “It’s back”.

Very hard.

Yes.

How did the whole family react to that news?

Oh, I think as I was so upbeat and blasé about it all, they followed me. And if I’d have been in, sitting in a corner crying and cringing they’d have been with me. But I was saying, “Oh, oh we’ll see, I’m not dead yet.” And I remember one chap who said, “Well,” he said, “You’re taking this in such a jovial spirit, if you don’t mind me saying so, when it comes to chemotherapy and you lose your hair, you won’t have too much of a problem because you ain’t got too much hair.” He thought it was funny, it probably was funny. But that was, but that was the general attitude, I’m happy enough with it you know.

And do you really, did you really feel like that, or was it…?

I did yes, yes. I was always of the opinion, “I will fight it, I will be alright. I shall win.” And that’s still my philosophy.

Mm. Good.

So whatever they throw at me well I’ll, when the worst, I mean what has encouraged me this time, the first time when they said, “Right we’ll scan you after three cycles and if it’s not working goodnight.” There’s been none of that this time. He, the attitude is, “We’ll, we’ll scan you after three cycles and if it’s not working we’ll have to strengthen the dose.” So they’re expecting me to outlive three cycles.

Others said that they just had to accept what had happened, one saying that he had had a good life and wanted to make the most of the time he had left. He decided to spend his remaining time, which was much longer than he expected, doing practical jobs around the house to make life easier for his wife, doing up the house for possible sale, selling his best books and shotguns, visiting relatives, and visiting places he had always wanted to see in Britain.